Windfall for cancer research sets off a scramble for clout

ASHINGTON — When Vice President Joe Biden laid out plans for his major cancer research initiative in January, some public health advocates were alarmed. The plan to work toward a cure was ambitious, but there was virtually no mention of the importance of cancer prevention.

So in phone calls, meetings, and a public letter to Biden, the advocates delivered the vice president’s team a blunt message: Prevention had to be part of any serious effort to wipe out cancer.

By the time the website for Biden’s initiative was launched, it listed vaccines for cancer-causing viruses as a key goal — and said the initiative “seeks to accelerate progress in prevention, diagnosis, and treatment.”

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Personalized cancer vaccines rally the immune system to identify and kill cancerous cells based on genetic information from the patient's own tumors.Alex Hogan and Hyacinth Empinado/STAT

It was a case study in influence, and perhaps a testament of what’s to come: a major scramble for attention and clout among cancer advocacy groups.

With the Obama administration swinging behind Biden’s “moonshot” effort, and with the National Institutes of Health looking to build on its biggest funding increase in 12 years, cancer advocacy organizations see a window of opportunity to gain additional funding and attention for their respective causes.

But if the history of cancer politics in Washington is any guide, the competition will be intense.

There are more than 75 cancer advocacy groups that try to make their case in Washington, and while they may share broad goals, scarce resources have long engendered competition among them, fueling tension that is only likely to intensify with more money at stake. Some groups — especially the ones that want to stress prevention and environmental causes of cancer — worry that they’re already getting left behind.

Biden, for his part, has said that his grandfather always told him about three kinds of politics — church politics, labor politics, and regular politics — but that cancer has its own brand of politics, and it’s even tougher than the others. Lawmakers, researchers, and advocates who have dealt with cancer research funding say they would be hard-pressed to disagree.

“There’s constant competition in the cancer community. Each one has its own fan club and they are always fighting with each other that they should get more,” said David Korn, a former chairman of the National Cancer Advisory Board, a panel that helps the National Cancer Institute review grant proposals.

“Are there politics? You bet,” said Dr. Harold Varmus, a former director of the National Cancer Institute who also served as NIH director under President Bill Clinton — though he says Biden is navigating them well so far.

There’s enough at stake in the world of cancer politics to support a large and powerful Washington lobbying community. Cancer research centers, patient advocacy groups, and foundations spent nearly $10 million lobbying Congress and the federal agencies last year, according to a STAT analysis of the Center for Responsive Politics’ database of lobbying reports.

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That figure includes groups such as the American Cancer Society’s Cancer Action Network, the Leukemia & Lymphoma Society, the Pancreatic Cancer Action Network, and the National Breast Cancer Coalition, as well as the major cancer institutes and the organization that represents them.

The groups are trying to present a common front through a coalition called One Voice Against Cancer, which calls for more general funding for cancer research. And some advocates insist the politics are manageable. But they also acknowledge that there will always be tensions.

“To be a responsible advocate, you’re always pushing for more money to come to your disease,” said David Arons, chief executive officer of the National Brain Tumor Society, who’s now a member of the “blue ribbon panel” of experts that will advise Biden’s moonshot initiative.

Vice President Joe Biden speaks with participants in a roundtable discussion at Duke University Medical Center.Ben McKeown/AP

‘Brutal’ politics

Korn said he was “up to my eyeballs in the politics of cancer funding” when he headed the cancer advisory board.

“If it was the brain cancer doctors, it was ‘We deserve more than you do.’ The prostate guys, ovarian cancer, every group focusing on a particular piece of cancer felt that they should be getting more of the money, and that there was money going to others that they could do something better with,” Korn said.

There’s more to cancer politics than just the advocacy groups. Biden and his team will also have to contend with researchers who have incentives to resist collaborating with each other and sharing data, lest they lose credit for their work.

And members of Congress are urged by top lawmakers and staffers not to steer funding toward pet research causes. They usually obey — except when they don’t.

Scott Lilly, a former Democratic staff director of the House Appropriations Committee, called cancer politics “brutal,” noting that the “cancer industry” — major cancer centers, pharmaceutical companies, makers of radiological devices, and advocacy groups — is “infinitely larger than it was in the 1970s” when President Richard Nixon declared war on cancer.

“Each [cancer center] wants to have more advanced research, they want to get more press releases for more discoveries,” Lilly said — while cancer groups bring patients to lawmakers’ offices to make emotional pitches for more research funding.

The Obama administration’s request for $755 million in “mandatory” spending — an automatic funding stream that doesn’t have to comply with the budget limits in federal law — has also led to tensions with the Republican-led Congress.

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Representative Tom Cole of Oklahoma, the chairman of the congressional subcommittee that funds medical research, said he shares the White House’s interest in working toward cures, but that his subcommittee doesn’t have the authority to approve the mandatory spending, and he doesn’t believe other committees will do it.

The White House, he told STAT, needs to help identify other programs that can be cut.

“I can do it without their input,” Cole said, but “I’m not looking for a fight.”

Emily Cain, a spokeswoman for the White House Office of Management and Budget, said Congress itself has proposed “mandatory” funding for NIH in the past.

Years of emotional appeals from cancer advocacy groups have left other Republicans exasperated, caught between the need to meet with advocacy groups that bring cancer patients to their offices and the determination to keep federal spending down.

“The meetings are very formulaic. ‘We’re underfunded, we’re on the verge of a breakthrough, here’s Joe Victim, listen to his story, it’s very sad,’ and no knowledge of what the funding levels are, or what the last breakthrough was,” said former Republican Representative Jack Kingston of Georgia, who was Cole’s predecessor as the chairman of the health funding subcommittee. And when he asked what other spending should be cut to pay for more cancer research, he said, the answer was always the same: “That’s your job.”

The fight for attention

The reality is that there has always been a political hierarchy among cancer advocacy groups.

Breast cancer and prostate cancer groups command more political clout and get more attention than most others — partly because those diseases affect so many people, and partly because they have developed such effective public relations tactics, like the pink ribbons that symbolize breast cancer awareness.

Advocates for pediatric cancer research have also built up tremendous political power because of the emotional nature of their appeals. In 2014, they succeeded in pushing Congress to pass the Gabriella Miller Kids First Research Act, which created a special fund for research on pediatric cancer and other children’s diseases.

But advocates say pediatric cancer research is still often overlooked. In recent years, they have worked aggressively to press the National Cancer Institute (part of the NIH) to increase funding.

Jonathan Agin — a Washington attorney whose daughter, Alexis, died of a pediatric brain tumor called diffuse intrinsic pontine glioma — recalled writing an open letter in 2012 to Varmus, then the NCI director, calling out the agency for spending only 4 percent of its research funds on childhood cancer.

He and other pediatric cancer advocates eventually got their meeting with Varmus, which defused a lot of the tensions. But Agin also recalls that NCI played down the 4 percent figure, arguing that cancer research, in general, has benefits for children with the disease. “They basically had the approach that you can’t look at funding in a vacuum,” Agin recalled.

That’s the argument NCI has tried to make to advocates for years — not always successfully. Dr. Otis Brawley, a former NCI official who’s now the chief medical officer for the American Cancer Society, notes that crizotinib, which has been approved for the treatment of lung cancer, was developed through research that was originally focused on leukemia and thyroid cancer. “You have to be able to think broadly,” he said.

If pediatric cancer research advocates have among the most emotionally powerful narratives to draw on, advocates for lung cancer might have one of the harder sells because of a stigma that people with the disease have brought it on themselves through smoking.

Indeed, the American Lung Association says there is a disproportionately low level of funding for basic research and clinical trials for lung cancer compared with other cancers.

Harold Wimmer, national president and CEO of the American Lung Association, said part of the problem is that lung cancer kills so many of its victims so quickly that there are few survivors to advocate for better treatments. More than twice as many women die each year from lung cancer as from breast cancer, he notes.

“We are getting the message out that anyone can get lung cancer and that no one deserves lung cancer or any other cancer,” he said.

Don’t forget prevention

Most of the rhetoric surrounding Biden’s “moonshot” initiative is focused on the possibility of speeding up research into new cancer treatments. And that’s what worries prevention advocates. New therapies are important and necessary, they said, but there are already things we know how to do to prevent cancer from ever happening: eating healthier foods and avoiding smoking, for instance.

Vaccine research can be important, too, but “we need to do a better job educating people on how to prevent cancer, and we need to get people to change their behavior so they can incorporate what we already know,” said Carolyn R. “Bo” Aldigé, the president and founder of the Prevent Cancer Foundation.

Part of the issue, some public health groups say, is how “prevention” should be defined — with the moonshot effort focusing mainly on vaccine development and early cancer detection.

“When you talk to NCI, they immediately go to vaccine production and individual screening enhancements,” said Tony Mazzaschi, senior director of policy and research at the Association of Schools and Programs of Public Health, the group that organized the public health deans’ letter to Biden. “There are a lot of things we can do already, but there’s always that allure of a cure. We’re always looking for a magic bullet.”

There are also some federal officials who say environmental causes should be part of the discussion.

At the National Institute of Environmental Health Sciences, an outpost of NIH based in Research Triangle Park, N.C., officials are disappointed that the moonshot does not include a mandate to focus on what they call “primary prevention” — actions that can be taken to make sure that people avoid cancer in the first place.

“It’s genes and the environment working together and we can’t forget one in favor of the other,” said Gwen Collman, director of that agency’s division of extramural research and training. She would like to see additional dollars to extend their research on environmental causes of cancer, such as air pollution and toxic chemicals.

President Obama signs the Gabriella Miller Kids First Research Act in April 2014.Manuel Balce Ceneta/AP

Keeping Congress away from the steering wheel

The Gabriella Miller Act was one of the rare departures from the general rule of Congress, enforced by top appropriators and their staffers, that discourages lawmakers from trying to favor any particular kind of cancer research.

“There’s been a long tradition … not to pick winners and losers in disease research funding,” said Jim Dyer, a lobbyist with the Podesta Group who served for many years as the Republican staff director of the House Appropriations Committee.

But there was another recent effort to do just that — a pancreatic cancer bill that drew loud protests from the National Cancer Institute until Congress agreed to broaden the scope.

In 2009, Representative Anna Eshoo, a California Democrat, introduced a bill that would have set up a separate Pancreatic Cancer Initiative at NIH, creating a new committee that would have told NIH and NCI how much money to give to pancreatic cancer research. It was based on a proposal by the Pancreatic Cancer Action Network (PANCAN), a California-based advocacy group that said pancreatic cancer needed a special research initiative because it was so deadly, with three quarters of all patients dying within a year.

“We’re not making progress in all forms of cancer, and pancreatic cancer was the poster child for that,” said Megan Gordon Don, PANCAN’s chief lobbyist in Washington. The group talked to Eshoo about the bill, and “she absolutely from the get-go understood, and wanted to do something to make a difference,” she said.

There was just one problem: It was a transparent effort to bypass the normal decision making process at NCI — and NCI’s leaders, especially Varmus, didn’t like that.

“NCI, just like most entities, doesn’t like to be told what to do,” Don acknowledged.

So Eshoo and other lawmakers broadened the legislation. It became the Recalcitrant Cancer Research Act, requiring only that NCI develop “scientific frameworks” for research on two cancers that had a five-year survival rate of less than 50 percent. That category has its own advocacy organization — the Deadliest Cancers Coalition — and includes pancreatic cancer, as well as several others: lung, liver, brain, esophagus, stomach, myeloma, and ovarian cancer.

In that form, the legislation won broad support from lawmakers from both parties, and President Obama signed it into law in 2013 after it was attached to an unrelated bill. NCI has issued its two “frameworks” under the initiative — one for pancreatic cancer, the other for lung cancer.

That was a relatively pain-free solution. With the cancer moonshot, it will be harder to find a resolution that keeps all of the interest groups happy — short of a big funding increase that, somehow, doesn’t take money away from any other disease research supported by NIH.

“If, like the war on cancer, the moonshot leads to more money for the entire NIH research budget, is a rising tide that lifts all boats, I think it’s fine,” said Korn. “If it takes money out of the rest of the NIH program, or flattens it to afford the moonshot, then I don’t think it’s such a good idea at all.”

An earlier version of this story incorrectly identified the group that is concerned about low levels of funding for lung cancer. It is the American Lung Association.

We need to keep, “first things first” particualary as it regards health of mind and body. And that means far, far greater attention and education on prevention involving how we live, and what we eat and breath. And the greater us of mass communication of all kinds as to education on living a healthy life from womb to grave, starting with prekindergarten, extending into all places of living, work and retierment.